45, still alive.

I’ve just spent a few more days as a guest of the local hospital. Boring boring, I won’t go on about it, I thought it was another blood clot, but it turned out to be more inflammation bought about by my beloved SIRT beads, this time localised inflammation to the liver, which manifests as shoulder pain. I was admitted for a few days, had a few scans that showed nothing sinister, and put on a course of steroids and all the good painkillers.

I was still an inpatient on the Tuesday when I was due to have chemo, so I was wheeled over to the integrated health to have it. Unfortunately, for the first time in 25 cycles, my blood counts were not good enough to have it. My platelets were low (we weren’t too worried about this as we had been hitting me with blood thinners in case of a clot and this will have the platelets shaking in their boots.) Sadly though, and more scarily for me, I was neutropenic, my immune system not really strong enough to have it. I’ve always bounced back really well between cycles, ready to have the next one, but not this time. The hospital oncologist felt that my body might be going into real protest now, and we might be in with a fight each time to get the chemo into me. It was a bit dishearteniing, but perhaps I just needed to get home, as I was released the next day, enough for one refreshing nights sleep at home, and then returned to the hospital the next day to have my new port inserted and old one taken out. My bloods were checked, and the platelets were on their way up, and incredibly, overnight, my neuts had totally recovered. So, looks like all systems go for next Tuesday, for what I hope will be my second last chemo for the time being, after which time I will go and have the lung treatment and have a break. Emotionally it has been a bit of a struggle, but I am still ticking boxes, just taking the long way round. I have to hang onto that.

The best, and the worst thing about spending time on the oncology ward is the people you meet. I remember when I was diagnosed, and for the first few times I had to be admitted, I begged them NOT to send me to the cancer ward – I was just simply terrified of being there. In the meantime though, I have come to terms with it a lot more, and definitely prefer to be sent there, as there is a special collection of nurses and doctors who really know how to look after the physical and emotional needs of people with cancer.

This time, my ward mates were Bev, who has lung cancer, and Sharon, with bowel cancer. We were all in various states of struggling, and our nights were hard, but our days were actually filled with a lot of laughter and solidarity. There is simply no one that understands what another cancer patient is going through, physically and emotionally, than someone in a similar boat. Usually you keep in touch with some people, but this time it was different..just in the space of a few days it felt like our families were joined. There was much excitement about my lovely book, so I was able to get Gaz to bring in a couple of copies for my wardmates. Gosh I love sharing that book. There has always been excitement around in on the ward and I always get greeted by hugs and kisses from the nurses who have enjoyed it, and this time the kids were thrilled to go past the nurse unit managers office and see a copy of it on the shelf in there…”look mum, there’s your BOOK”. It makes them proud, and me proud, but I don’t say this with some raging ego, because the best thing that has ever happened to me through the blog, and then the book, is the joining together it brings between me, and other people. I know that Bev, and Sharon, and their families will be able to read it, and see parts of their own experiences with this fucked up disease, and feel less alone. There was Bev’s husband David, her daughter Marcelle who came down from Sydney, her son Jay, who has had so many people in his family impacted by cancer that he is about to ride from Brisbane to Melbourne to raise money for Peter MacCallum cancer hospital here in Melbourne. And there was Sharon’s loving and devoted partner, Jeff. Every night my visit from Gaz and the kids was looked forward to and anticipated, and we all got to know each other in a way where you know if you met these people under different circumstances, (and fuck you wished you did), you would still want to be mates. So much love to all you guys, thanks for the lift home, and the gifts for my girls which will always be treasured.

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While in hospital, we heard the story of Sharon’s partner, Jeff, who was given only a few months to live with aggressive leukemia more than five years ago. At the 11th hour, he was put on a trial drug, and is still very much here today to tell the tale. He books in for a blood infusion every couple of weeks, but otherwise lives a perfectly normal life. You hear about these things happening, but it is very rare to meet an actual person who it has happened to. My oncologist, who originally thought that my life expectancy would be very short, said to me last week “we are in unchartered territory now”, I’ve gone way past my most optimistic “use by date”, I am stable, benefitting from new treatments, and feeling what it feels like to be hopeful again. To believe that my cancer might be able to be treated like a “chronic illness” and that I could go on for some years. Now we are just all about looking for the next thing to keep me alive, to stay ahead of the game. I like unchartered territory, I was never much a fan of the well trodden road anyway.

Today I started planning my 45th birthday celebration – it’s in a few weeks. I was called to re-read a post from March last year, where I was planning my 44th, and in my mind, certainly my last. It was, this terrible, terrible day, right up there in the top five worst days of my life. Kez and I had gone to Costco to check out the party food situation. I had been in pain all week, and had needed several visits from palliative care, and I had just failed the liver resection and been given a few months to live. I saw some pyjama’s at Costco that reminded me that this would be the last year that I would buy my girls their Easter pj’s – a bit of a tradition in our household. I had a complete meltdown and had to come home. The party, when it happened, was equally diabolical. I had to sit in a chair all night and had to wait for people to come to me to speak to me, as i was in too much pain to stand up. The party ended, for me, at about 1am, when I had to leave my remaining guests to come downstairs and be visited by palliative care with another one of their loaded syringes. Everyone there thought they were saying good bye to me that night, certainly no one thought I could survive another year.

And yet, here I am, nearly a year later. I feel a great deal more healthy that I did on that warm March night last year, and I look to the future with hope of new treatments that were still very many months from presenting themselves on party day. If you have been told your days are numbered, that there is no hope for you, come and walk beside me today. You just never, ever know what is around the corner, please, never, ever give up – next year it might be you planning another birthday party you never thought you would get to have.

4 Comments on “45, still alive.

  1. Thanks so much for sharing this journey you are on. It is a real joy to celebrate with you as you soldier on – even when you are weary – and I am sure that anyone reading this (with or without cancer) is very encouraged by your bravery and determination throughout each day. Be blessed. Debbie Xxx

  2. How you shine a light for everyone Julia.
    My uncle ( & we , his family) received the worst news recently. I just got updated tonight.
    I wish you many more birthdays and more good days & nights than the other kind.
    I’m inspired by your resilience and poignant words.

  3. I’m so happy for you and no doubt there will be loads of ladies like me, who have never met you, but love you and pray for you constantly, celebrating your birthday with you on your special day all around the country and probably, the world! Lets pray there are many more to come! xx

  4. Happy Birthday Julia. Just read your wonderful book. As a nurse working in a busy Radiology department and daily assisting with port insertions/removals, fluid drainages, CT scans, SIRT procedures I am grateful to have your REAL perspective and want you to know how much your words will stay with me and help me to care for my patients with better insight. Thank you for your honesty and courage.

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